A Guide for Military Families (PDF)

Life Journey through Autism:
A Guide for Military Families

Organization for Autism Research

Life Journey through Autism:
A Guide for Military Families
by

Organization for Autism Research
2000 N. 14th Street, Suite 710
Arlington, VA 22201
(866) 366-9710 (Toll-free)
www.researchautism.org
and

Southwest Autism
Research & Resource Center
300 North 18th Street
Phoenix, AZ 85006
(602) 340-8717
www.autismcenter.org



Production and distribution of the Guide for Military Families
was made possible through the generous support of
the American Legion Child Welfare Foundation.

This publication is designed to provide accurate and authoritative information concerning the subject matter covered. It is published with the understanding that the
Organization for Autism Research, Inc. is not engaged in the rendering of legal, medical, or other professional services. If legal, medical, or other expert advice or assistance
is required, the services of a competent professional should be sought.
Copyright © 2010 Organization for Autism Research, Inc. All rights reserved.
No part of this work may be reproduced or transmitted in any form or by any means,
electronic or mechanical, including photocopying and recording, or by any information storage or retrieval system, without prior written consent of the Organization
for Autism Research, Inc., unless such copying is expressly permitted by Federal
copyright law. Address all inquiries to the Organization for Autism Research, Inc.,
2000 N. 14th Street, Suite 710, Arlington, VA 22201.
www.researchautism.org

ORGANIZATION FOR AUTISM RESEARCH
Research and resources that help families today!
January 2010
Dear Readers,
Hi, my name is Greg Smith, a member of the Organization for Autism Research (OAR) Board
of Directors, parent of a child with autism and retired Air Force member. I was asked at our
last Board meeting if I would be interested in writing an item to go along with the publication
of our military families’ guidebook, Life Journey through Autism: A Guide for Military Families.
It is with great pleasure that I write this message.
My daughter was born prematurely when I was on active duty and there were a lot of caring
people that provided immeasurable help as my wife and I grappled with the many questions
that we faced with our daughter’s issues. As I look back on those times, I feel very blessed. So,
when I was asked if I would be interested in joining the Board of OAR, I saw it as an opportunity to give back a little of what I had been given in the way of support. OAR has afforded
me the chance to fulfill my desire to give something back and for that I am very thankful. My
involvement with OAR has allowed me to stay engaged in the broader autism community
and in tune with the greater struggle faced by families dealing with this disorder. When I
consider this disorder in light of my background, there is an extra special place in my heart
for those who support and defend our country and our way of life.
We know there are additional hardships faced by our military families when it comes to dealing
with this disorder. These hardships are manifested in many ways to include military members
deploying which means in many cases, a spouse has to handle the many issues that arise on
the “home front” on their own. There is the issue of separations from extended families which
further highlights the need for additional support. In spite of these and other hardships, our
military families keep getting up each day and doing the best they can to take care of their
families. There is a strong “sense of duty” and focus. I am honored to have been a member of
this honorable profession and the people who have served and those who are still serving.
Because of the sacrifices that our military families make on a regular basis, the Board is honored
to see our organization produce this publication in support of our military to accompany our
military families’ Web site. These efforts are but small tokens of our support to the military,
but these efforts are from the heart. The publication and companion Web site are there for
your use and the Board looks forward to your feedback on ways to make them even better.
We salute your tenacity in dealing with not only autism, but dealing with this disorder along
with the attendant military issues. OAR will continue to do what we can to support you and
we greatly appreciate your service to country.
In closing, I must echo the sentiments expressed by our Executive Director, “thank you for
your service to all the men and women serving in the Army, Air Force, Navy, Marines, and
Coast Guard and all their reserve components today.”
Sincerely,
Gregory L. Smith
Member, Board of Directors
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ORGANIZATION FOR AUTISM RESEARCH
Research and resources that help families today!
Dear Readers,

January 2010

I never served in the military, but have always admired those who did starting with my late father, who
served in the U.S. Army in North Africa during WW II. Pop was proud of his service, but never talked
much about what he did, which may in part explain why I enjoy reading military history within my
passion for reading in general. I’ve read enough to know that it takes a special person to wear your
uniforms and do what you do in service to our country. Thank you for your service and sacrifice.
On the other hand, I do have a lot of experience working with families with autism and know all too
well the challenges that having a child with autism can pose for the child, you as parents, and your
other children and family members. Knowing how difficult autism can be under “normal” circumstances leaves me reaching for words to describe the extra pressure autism places on a military family
that has a child on the autism spectrum.
I cannot speak to the challenges that military life and its environment may pose, but I will offer four points
that should serve you well in your duties as a parent of a child with autism regardless of military assignment or locations. First, as this Life Journey through Autism Guidebook (and the Operation Autism Web site:
http://www.operationautismonline.org/) emphasizes, you must learn everything you can about autism as
it pertains to your child. Only by becoming an informed and knowledgeable parent can you make the
best choices on behalf of your child. You will be faced with an overwhelming onslaught of information,
misinformation, opinion, theories, and research outcomes. At the end of the day, it will be up to you to
make sense of all this information and make decisions in the best interests of your child.
I’ve learned many times over, “Life isn’t fair.” It’s probably the same with respect to aspects of military
life, and it’s assuredly true with respect to caring for a child with autism. While one parent or the other
may, at different times, shoulder more of the responsibility for caring for their child with autism, coordinating treatments, and working with schools and teachers to ensure the best educational environment,
I cannot overemphasize the importance of working together as a team and sharing accomplishments
as well as challenges.
Building on that last point, autism is difficult for the child and you without a doubt. At the same time,
it is not a death sentence. Your child has potential and a future. With effective early intervention,
perseverance, patience, and love, a life of yet unknown possibilities awaits. Keep the faith, and press
on. As you do, keep in mind the importance of finding, supporting, and capitalizing on your child’s
strengths at every step along the way.
Finally, take care of yourself, and find time for R&R. I’m not talking about a week in Hawaii or some
other exotic location (but don’t rule it out if you can swing it!). Autism can be all-consuming as you
immerse yourself in the mission to do what’s best for your child. It can take its toll on your family, your
marriage, and your health. R&R in this context is as basic as allowing yourself time to read a book about
something other than autism, go for a walk with your spouse, or train for a marathon as many of our
RUN FOR AUTISM runners-parents have done. Don’t ask me how, but it’s healthy and good. As the
saying goes, you have to take care of yourself if you really want to take care of your child.
That’s it. Learn. Share. Emphasize ability over disability. Take care of yourself. It has been an honor to
contribute to this publication and it is my great hope that it helps you and your family find success in
each of the four points. Thanks again for your service.
Sincerely,

Peter F. Gerhardt, Ed.D.
President and Chair, Scientific Council
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ORGANIZATION FOR AUTISM RESEARCH
Research and resources that help families today!
Dear Readers,

January 2010

In some respects this project has been more than 40 years in the making, beginning in 1969,
when I was commissioned an officer in the U.S. Marine Corps.  In less than a year, I was on
my way to “WESTPAC” and my first leadership assignment.  Beginning then and at every
stop after, the Marine Corps taught me that a leader’s first and most important charge was to
“take care or your men and women.” This responsibility extended beyond training, combat,
and military affairs to taking care of the families of the people we led as well. It’s no different
for today’s leaders.
That sense of responsibility was re-awakened with new purpose after we founded OAR, and
I met people like Karen Driscoll, a Marine wife and autism Mom; LtCol Scott Campbell, USA,
another autism parent-champion; and Joe Valenzano, a Marine in earlier days and today
CEO and President of Exceptional Parent Magazine, and advocate-champion for families that
have members with special needs and disabilities.  I had been looking for the opportunity
to extend OAR’s work to military families touched by autism.  The example of these three
persons moved us to from ideas to action.
In 2007, OAR’s Board of Directors gave the green light to develop an initiative focused on
military families touched by autism.  That October, the American Legion Child Welfare
Foundation awarded OAR a grant of almost $41,000 to create the Operation Autism Web site
and produce the Life Journey through Autism: A Guide for Military Families guidebook that you
now have in your hands.
Now that the work of creating these resources is done, OAR and each of the persons who have
contributed to this effort can enjoy the special satisfaction that comes with knowing that we
have indeed done something meaningful for others. In this instance, it was for that special
group of men and women who serve in uniform today and their families.  Just like 40 years
ago, it’s called “taking care of our own.”
The Web site and this companion Guide for Military Families stand as OAR’s way of serving
military families with children on the autism spectrum and saying “thank you for your service” to all men and women serving in uniform today. In that respect, offering these resources
is our small way of returning the favor. I hope you find this Guide and the Operation Autism
Web site useful.
Sincerely,

Michael V. Maloney
Executive Director



Dear Family,
We extend our heartfelt thanks to the U.S. men and women in uniform dedicating their careers
and lives to military service. And we open our arms to those living with autism spectrum
and related disorders, as we recognize their extraordinary courage and needs.
Like most families living with autism, we know parents wrestle with understanding and
accepting their child’s diagnosis as well as navigating daily life with this mysterious neurobiological disorder that includes lack of communication; lack of social connectedness; and
perseveration on repetitive tasks, sameness and routines. We also recognize military families
are presented with even greater challenges in raising children with autism as they face periodic
relocations, the absence of a spouse for extended periods of time and the inconsistent delivery
of support services among bases and communities for their dependent family member who
requires intensive intervention.
The Southwest Autism Research & Resource Center (SARRC) is proud to collaborate with the
Organization for Autism Research (OAR) on the production of Life Journey Through Autism:
A Resource Guide for Military Families, the third in a series of guides jointly produced by our
organizations that strive to empower parents with accurate information. This guide provides
tools for navigating the often-confusing world of autism and supports parents to be the best
decision makers possible on behalf of their loved ones.
Nearly two decades ago, when our son was diagnosed with autism, we were told to love him,
accept him and plan to instituionalize him because there was no hope for individuals with autism. That
wholly unsatisfactory response was the impetus for creating the Southwest Autism Research
& Resource Center (SARRC).
Founded in 1997, SARRC’s mission is to advance discoveries and support individuals with
autism and their families throughout their lifetimes. Our nonprofit is squarely focused on
helping affected individuals and their parents with the complicated day-to-day issues associated with the disorder. We provide diagnostic assessments, intervention services, school
and classroom support, life skills development and vocational training for young adults and
adults, and education, training and support for parents, relatives, professionals, diagnosticians, interventionists, educators and physicians. At the same time, we continue to search
for answers through our robust research program.
In recent years, we’ve spent more time with our affected military families to learn about their
experiences, including the process and timing of diagnosis; early intervention training and
support; base and area school support and integration; and the issues associated with supporting a child as they transition to adulthood. We hope to be of even greater support in the
near term as SARRC replicates its programs, expands its tele-diagnostic and tele-therapeutic
services and makes continued progress toward building meaningful futures for our children
as they enter adulthood—futures that include friends, jobs, homes and communities that
accept, support and value them.
Together in this journey,
Denise D. Resnik
SARRC, Co-Founder
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ORGANIZATION FOR AUTISM RESEARCH
Board of Directors
James M. Sack
Chairman
McLean, VA

Madeline Millman
Vice Chairman
Englewood, NJ

Peter F. Gerhardt, Ed.D.
President
Arlington, VA

Dean Koocher
Treasurer
White Plains, NY

William Donlon
Hicksville, NY

Lori Lapin Jones
Great Neck, NY

Anthony Ferrera
Hillsborough, NJ

Gloria M. Satriale
Chester Springs, PA

Lewis Grossman
Port Jefferson Station, NY

Edward Schwallie
Manasquan, NJ

Lisa Hussman
Ellicott City, MD

Gregory L. Smith
Lorton, VA

Staff
Michael V. Maloney
Executive Director
Peter F. Gerhardt, Ed.D.
President & Chair, Scientific Council
Alyssa Kruszyna
Assistant Director, Research and Programs
Lily Matusiak
Director, RUN FOR AUTISM
Julia Hornaday
Coordinator, RUN FOR AUTISM
Sarah Schuyler
Coordinator, RUN FOR AUTISM
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ORGANIZATION FOR AUTISM RESEARCH
Scientific Council
OAR’s Scientific Council is comprised of 16 leading autism and medical professionals and
serves as an expert information resource for all OAR matters concerning issues of research. In
that regard, the Council assists OAR’s Board of Directors in developing its research strategy,
near term priorities, and long-range research objectives. The Council also provides program
guidance and oversight for OAR’s research competition and plays a central role in ensuring
the highest quality reviews for prospective OAR research proposals.
Peter F. Gerhardt, Ed.D.
Founding Chair and President
Organization for Autism Research
Michael Alessandri, Ph.D.
Executive Director, UM-NSU CARD
Director, UM Marino Autism Research
Institute Clinical Professor, Department of
Psychology, University of Miami
Glen Dunlap, Ph.D.
Professor, Department of Child and
Family Studies
University of South Florida
Michael Fabrizio, M.A., BCBA
Clinical Services Director
Families for Effective Autism Treatment
(FEAT) of Washington
Joanne Gerenser, Ph.D., CCC-SLP
Executive Director, Eden II Programs
Staten Island, NY

James A. Mulick, Ph.D.
Professor, Department of Psychology
College of Social and Behavioral Sciences
Ohio State University
Brenda Myles, Ph.D.
Ziggurat Group
Dallas, TX
Samuel L. Odom, Ph.D.
FPG Child Development Institute
University of North Carolina at Chapel Hill
Shahla Ala’i-Rosales, PhD., BCBA
Assistant Professor
Department of Behavior Analysis
University of North Texas
Luke Tsai, M.D.
Visiting Professor
Human Development and Child Studies
Oakland University

Gerald P. Koocher, Ph.D.
Professor and Dean, School for
Health Studies
Simmons College

Ann Wagner, Ph.D.
Chief, Neurodevelopmental Disorders Branch
Division of Developmental
Translational Research
National Institutes of Mental Health

Suzanne Letso, M.A., BCBA
Co-founder and Chief Executive Officer
Connecticut Center for
Child Development

Mary Jane Weiss, Ph.D., BCBA
Director, Research and Training
Douglass Developmental Disabilities Center
Rutgers, the State University of NJ

Michael Londner, M.D., MPH, MBA
Inova Health Systems
Falls Church, VA

Patricia Wright, Ph.D., MPH, BCBA
National Director of Autism Services
Easter Seals, Inc.

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